The rate of Autism in the United States is now reported to be 1 in every 91 children. The "official" prevalence rate is up 50% from 1 in every 150 children just a few short years ago. Am I speechless? Am I surprised? Am I at a loss for words? Am I dumbfounded beyond belief? Are you nuts? Of course I am not surprised, nor bewildered, and I am definitely not speechless. You don't have to be part of the Autism Community for long before you realize that the "official" numbers have been inaccurate for a long time. Ask most of us and you will likely hear that the numbers still are only a snap shot (or reference point) that is going to be updated again and the results even more "startling" to the general public.
As the results became known throughout our community over the last month and prior to any "official" release from the CDC, the chatter became heavy regarding what it will take for us to wake up in America and do something significant. I have read many articles and listened to numerous podcasts and the following statement has been used many times over to explain the situation. The statement can be attributed to so many others that I will simply lay it out here in case you have not heard it......
"If 1 out of every 91 children born in the United States was born blind, or missing an arm, or without the ability to speak there would be mass hysteria and drastic measures would be taken. When will drastic measures and the proper alignment of resources be directed to study Autism?"
In some instances, the interviewee or speaker has referenced Cancer and other life threatening illnesses/diseases to drive the message home. Autism does not "end a persons life" or "cause death" so I am leaving those references out. The latest statistics show that 1 out of every 58 boys will be diagnosed with Autism. If you are giving birth to a boy in the United States should you be concerned? What else do you need to know?
You and everyone you know should be very clear on the fact that there (currently) is not a medication, diet, or therapy that "cures" Autism. The Autism Spectrum references a wide array of developmental, social, and cognitive delays and challenges. There are no two people with Autism that are exactly alike. Where diet and supplementation may have made a difference for some, others may not have seen any significant or positive changes. Some may find their child's system has a heavy metal (high toxicity) content and others will find their child to be at the "normal" or even "below normal" level. Some see significant improvement with chelation therapy, while others see significant improvement with hyperbaric oxygen therapy. Applied Behavior Analysis, Speech Therapy, Eating Therapy, Occupational Therapy, Craniosacral Therapy and the list goes on. Many of these therapies and treatments are widely utilized, widely accepted, and extremely common in the Autism Community. You need to know your options, you need to know what is available to help and support your child or adult living with Autism.
In some cases, children who were once diagnosed (because they met all the criteria) with Autism may lose their diagnosis. Does your child losing your diagnosis mean they have the cognitive ability, social skills, intelligence, and coordination that their peer group has? That they can immediately function successfully in a "typical" classroom? I don't know the answer to that question. I do know what I have witnessed and what I have learned from speaking to thousands of people who have Autism or "had" Autism. Don't be fooled that because someone may "lose their diagnosis" that they are free and clear of needing any additional supports or therapy. Life isn't that simple. I have met many families that have seen their child "lose their Autism diagnosis". In some cases, the child is able to progress into the teen years and adulthood with no problem. In the majority of cases, it appears everyone sees the obvious except for the family. The diagnosis may be removed but the child is still in desperate need of support and therapy (which can be a wide range).
Whether it is a man or woman, high socioeconomic status or low, their stories are often similar. These "recovered" adults have told me how hard they worked to "get better" and when they no longer were considered "Autistic" everyone was happy. After they "recovered" their entire world crumbled around them. The therapists they came to rely on, the school staff that helped them, the patience others showed them, the social skills they worked on..... all went away. The world didn't accept them and everyone wanted to know what their problem was because they were "no longer autistic". Are we listening to our children? Are we paying attention to those who actually did benefit from early intervention and what they can tell us now? What can we learn from those who do have a voice, who can speak for themselves? More boards of directors at non-profits, leadership teams, and support programs should draw on the expertise of those who are living with Autism to help better understand what life with Autism is really like. As filmmakers and technologists, we get to know the people behind the stories and it is our job to listen to what they have to say. We have to tell their story and not adjust it to fit our needs. The same principals should be applied across all the organizations supporting and pushing for advancements in Autism research and awareness.
There is tremendous danger in spreading false or inaccurate "cures" of "fixes" when it comes to the world of Autism. I can't begin to tell you the number of times I have been told, "I had a friend, who had a sister who did ______(fill in the blank with anything you want...diet, pill, drops, therapy) and it cured their child of Autism. You should try it with Sam." Thank you, these are well intentioned offerings of insight and hope and I understand you are trying to help. This typically will lend me the opportunity to correct the confusion and help the kind person understand that the world of Autism is not a one size fits all. Neither is the world of health care and insurance for that matter.
With all the advancements and early interventions we still have Autism. Through all the heartaches and all the successes we still have Autism. There is Classic Autism on one end and Asperger's Syndrome on the other. There is a child being diagnosed with Autism right now. We must continue to take steps forward in the search for answers and we must provide the world with accurate information. I hope that you take a moment to tell a friend or loved one that the Autism incident rate has increased significantly in the United States and that 1 in every 91 children born will be diagnosed with Autism. I hope you ask them to write their Congressman and tell them to support Autism research. If you can write a check or donate your time to any of the wonderful non-profits that are working towards finding answers and raising awareness we highly encourage you to do so. There are adults and children that need us to support them in reaching their full potential and we can not be bystanders. Here at AutismSpot, in our own, small way, we are committed to pressing forward to ensure that all of us in the Autism Community have tools and resources beginning at the moment of diagnosis through the entire lifespan.